The Spoonie Guide to Xmas…

Christmas is joyous and lovely and incredibly hard for the chronically ill. On top of keeping up with every day life there are a million other tasks to contend with. Not only is there shopping, wrapping & cooking, but there are a multitude of festive social events. Oh & the expectation that we’ll all be merry and bright.

When you’re chronically ill you don’t get time off for Christmas. Keeping up with seasonal demands when you’re in pain & exhausted can be impossible. Here’s my spoonie guide to surviving Xmas. Plus a little advice for friends of family of the chronically ill.

Make a list, check it twice.

The only way I can keep track of what needs to be done is making a multitude of lists. Lists help combat so many issues. If you’re dealing with brain fog, anxiety, impaired cognitive function, fatigue and so on, lists are life savers. I usually break things down into categories and try to assign a time scale to each list. The trick is to be realistic about how much you can do each day and not freak out if you don’t complete your list. Simply roll over outstanding items. Accept that some times you will have to make cuts. You can’t do everything. The world will not end if you don’t post the Xmas cards this year.

Start early & manage expectations.

I always start Xmas prep super early. The longer you have to get organised the more you can spread the work load. Getting a jump on the shopping also really helps if you have a tight budget. It is much easier to find smaller amounts of energy & money.

Be honest with yourself and others about what you can manage. If you have to trim the gift list or swap a phone call for a meet up, do so. I believe Christmas is about embracing the ones we love. Try to work out in advance which parties/get togethers you comfortably manage and communicate that. Float the idea of secret Santa style gift giving rather than buying everyone in your group an individual present. Expensive presents don’t matter. An enjoyable phone call or grabbing a quick coffee is much nicer than forcing yourself to suffer through social engagements that cause you distress.

If you have to cancel, make your apologies, but be firm. You didn’t choose to be ill. You are not intentionally disappointing. Remind yourself of this and try your hardest not to feel guilty.

The internet is your friend.

I do the majority of my Xmas shopping online. It is much less stressful and physically taxing to order from the sofa. The shops are crazy at this time of year. Not to mention the weather is awful. Stay warm & rested and get your festive haul delivered. This goes for food too. You can order in advance and have the Christmas groceries delivered as and when you need them.

Allow yourself to enjoy what works for you.

Christmas comes with a variety of traditions. Everyone has their own variations and seasonal essentials. It’s lovely to uphold family traditions, but only if they work for you. This is your life and your Christmas, you are entitled to enjoy the festivities. If something will negatively impact your health, don’t do it. There is no joy in activities that hurt you.

Establish your own Christmas customs. Whether that is embracing existing rituals or just making up them up from scratch. Deck the halls, wear an ugly jumper, stick cinnamon on everything or don’t. Suit yourself. Celebrate in style, but make it your style.

Don’t be a dick.

This is for the loved ones. If someone in your life is dealing with chronic illness, be kind. We know we disappoint sometimes. We get that we’re not the easiest to accommodate, but please be patient. Cut us a little slack. As inconvenient as our symptoms can be for others, trust me dealing with them every single minute of our lives is harder.

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Shelter from the storm…

I’ve had a pretty blue day. There’s proper storm blowing around outside & I am incredibly tired, which definitely hasn’t helped. Mostly though, I feel shit because too many people have been horrible to me this week.

I had a very small day surgery on Monday, which went smoothly & really wasn’t a huge deal. It was on my dodgy leg & in a spot when stitches are very easy to burst, so I was told to be careful. With that in mind I got a taxi to the train station early on Tuesday morning (I watch my nephew on Tuesdays). The station has a little car park at one side, but that is not the platform I get the train from, so I need the taxi to stop on the main road. I say need because I mean need. If I get out in the car park I have to go out up a big flight of stairs to street level over the tracks & then down a smaller staircase to the platform. Getting out on the street means navigating one smaller set of stairs (which is hard & sore & slow enough). The taxi driver of course did not want to stop on the main road. He was annoyed that he’d have to go a little further down the road to turn at a roundabout & he didn’t want to pull over on a busy road. He argued that it made no sense when the station had a car park. Now, maybe I’m a bitch, but in my mind part of the convenience of paying a taxi to take me somewhere is that I don’t have to explain myself & I get to go where I want to go. I don’t relish having to explain my disabilities & why I can’t do certain things. Especially when I walk with a stick & it’s bloody obvious that stairs are not my friend. I did however tell the driver why I wanted to be dropped in that specific spot, but he still wanted to argue. Thus I had to say either drop me where I say or take me home and don’t get paid. With much muttering under his breath he did as I asked, which probably took less than 5 minutes more & was basically zero hassle to him. This, my day is off to a crap start & I’m already tired of just trying to move around in the world.

I struggle down the steps just in time to heave myself on to a packed train. The train is headed into town & it’s 7.45am, of course there are no seats left. I make my way to the seats that are reserved for the disabled, elderly etc and everyone sitting there avoids eye contact. I don’t know why people do this because not looking at me does nothing to reduce my need to sit down. All it achieves is putting me in the horrible position of having to ask for seat. This, I duly do. I politely ask the women in the closet seat if I can have her seat if she is able to stand. I am met with huffing & puffing as puts her jacket back on and a glare as she vacates the seat. I thank her anyway because I have some bloody manners & sit whilst others who previously avoided looking in my direction now recover their ability to see me. They now make full use of this rediscovered function to gawk at me for most of the journey. I’m sore & tired & anxious & very conspicuous. It isn’t even 8am. I arrive at central station & have to buy a ticket. There was no ticket inspector on the first train & I have to get a second to complete my journey. The ticket office on the platform has the barriers set up to control the queue. I have to walk around it to get into the queuing area & follow the barriers to actually reach the end of the line. I’m slow, i’m conscious of not messing with the wound on my dodgy leg & I am worried about this queue because I’m really not sure I can stand that long. Roll on more rude people. As I follow the path made by the barriers people just barge right past me. One women even does a little run just as I near the end of queue so she can get in front of me. What kind of dickhead rushes to skip a disabled person who is clearly having difficulty? I don’t know, but I can tell you there are too many of them & I don’t always have it in me to let them know that they’re a knob.

View from the train

Anyway, I get my ticket. I locate the platform of my next train. I find a seat because I can’t go any further until I’ve had a rest. I eat a lovely banana, check my messages & listen to some tunes whilst I gather myself. When it’s time to to head to the train I have recovered some equilibrium. I’m thinking today can be saved. One train journey & I can cuddle my gorgeous wee monkey. This is what I’m thinking as make my way along the platform & a large man barges right into me. He took me completely by surprise, I had nothing to steady myself on & went flying. Mr ‘catching my train is life’ didn’t even stop. No apology, no let me help you up. Kept marching right on & boarded his train. Incidentally his train was my train & it wasn’t leaving for 9 minutes. Whilst he presumably found a good seat I was lying on the platform bleeding. A nice ticket guy helped me up & onto the train. He even radioed someone the description of the guy who knocked me over, but to what end I have no idea. I’m not sure what anyone could really do other than tell him he was a prick. That surgical wound I was being oh so careful with is now bleeding furiously. I didn’t want to remove the dressing on the train, but I’m sure the stitches have burst (they had). So, I’m applying pressure & being watched by other travellers (again) as I try to put myself back together. I was pissed off, but focusing on gathering myself & getting where I needed to go.

Mr nephew was, as always, a delightful little bundle & I got through the day. I arrived home last night utterly exhausted & dropped into bed almost immediately. After a fitful night of sleep I awoke feeling just as tired. My leg is swollen & the wound can’t be restitched (it’s been open over night & restitching would be an infection risk). It will heal, but slower & messier. I had things to do today, but I didn’t do them. Partly because I was in a fair bit of pain and exhausted. Mostly, though, because there was a strong wind & yesterday shook my confidence. The accumulation of the rudeness, arguing, staring & knocking me to the ground was that today I was acutely aware of my disabilities. I didn’t feel up to dealing with the world & perhaps ending up worse for wear again. That realisation made me feel like shit.

cheeky baby
Cheeky monkey trying to steal my stick.

I don’t like to think of myself as fragile or incapable. I know my limitations & I try really hard to work around them. I have to think ahead. I do things a bit at a time & I sometimes have tackle things in ways that might not make sense to others. I know I can be awkward. I know that the accommodations I need can be a pest to others. All disabled people know this. We aren’t asking for seats or giving specific instructions for a laugh; it’s the only way we can live in the world. I already feel stressed & anxious about needing these things. I am certain I’m not alone in it that. So, when you force me(us) to explain ourselves it’s horrible. When you make a fuss about being stuck behind me as I move at glacial pace, you are making my life a nightmare. Your stares & sighs can ruin my day. Limping along with a stick at 37 is not my ideal life situation. Fainting on public transport is not a thing I relish. I did not choose to hurt all the live long day. I do not want to have to ask you for anything, but I can assure if I was in your shoes I’d offer my seat with good grace.

I’ll heal. I’ll give myself a shake & force myself back out the door again. I will hold my tongue (most of the time) as you push past me & roll your eyes. I shouldn’t have to, though. Living with my disabilities is hard enough. I don’t want to manage your arsehole tendencies too.

Dear Baby…

Dear Baby,

You’re not a baby anymore. Or you wouldn’t be. Today would have been your 18th birthday. I’ve been thinking a lot about all the things you could have been. I’ll never know what your talents are. What you loved & hated will always be a mystery. Our life together will forever be unknown. I’ve watched so many others mark the milestones in their children’s lives & my thoughts invariably turn to you. I’m not sure I’ll ever get over the blanks.

I have dreamt of every minute of your life. Waking from those beautiful fantasies feels like a stab in the heart. Every single time. I hope those dreams are snippets of how our life would have been. I don’t want to think of us as anything other than happy.

So, today you’d be a man. I’m sure you would be wonderful. The kind of person I’d be proud to have raised. I’ll always be proud regardless. Proud that my blood ran in your veins, thankful that your heart beat in me & grateful that we had any time at all.

Big love,

Always,

Mum.

Xx

Do I wear you out?…

I’ve had another really bad week pain wise. It feels like I’m been having a lot of bad weeks recently and I’m tired. So very tired.

Life goes on, though. Nothing stops because I’m in pain. So, I try to keep on going too. It’s exhausting. Pain wears you out. Even before you attempt to do anything, just being in pain is tiring. I’m not sure that many people know that. You start the day fatigued. Every single task you perform from that point takes enormous effort. You’re fighting the pain and the growing exhaustion.

Drs will tell you to rest, but complete rest isn’t feasible for very many people. I can’t rely on or expect other people to take care of my life for me. My house will stay dirty if I don’t clean it, my fridge will stay empty if I don’t fill it, my bills won’t pay themselves, medical treatment doesn’t come to my house, my cat needs fed and my teeth, hair, body won’t clean themselves. Those are just the very basics of life, but they can be overwhelming when every move you make is agony. It’s a no win situation. If I neglect these basics my quality of life is seriously impacted. My stress levels soar & mood plummets. Trying to keep up with daily life saps all my energy. Pain is exhausting & exhaustion lowers your ability to cope with pain. It’s a vicious circle with no obvious escape.

Plus living is more than one’s basic responsibilities. There has to be human contact & stimulation. Unfortunately those can be just as tiring as the daily dirge. I love writing. I love swimming. Both are good for me, body & mind. Doing either involves a string of wearying steps. I have to wear myself down in the hope of benefits that are never guaranteed. I have a wonderful friends & family. Excellent relationships I don’t want to lose or neglect. However, just making myself fit to be in company is sometimes a mammoth task. I don’t even mean appearance wise. My people will accept me with no make up & greasy hair. They can handle the days that I can’t walk very far or do very much. For which I am grateful. What I can’t ask of them is to soak up my ill temper. Pain makes you snappy & negative & frankly unpleasant. No one wants to be around that. Also, no one wants to treat the people they love that way.

What do I do? I monitor myself. I constantly keep a tight grip on that grump. Take a deep breath & swallow it down. Let me tell you, maintaining that front, is exhausting. Also, essential. I don’t want to be a nasty bitch. I want to treat people with respect. Of course I gain from this; my life is immeasurably better for having date nights & sister time & lunch with my bestie & joyous mini people in it. Pain is absolutely not an excuse for being a fuckwit. It’s right that I censor myself into being nice. It’s just that it’s incredibly draining. It is the same catch 22, don’t push myself to do these things and my life would be empty. Do them & I pay the price.

None of this is anyone’s fault. There isn’t really anything anyone can do to change these things. This is just my life. Oh & a lot of other people’s too. I have this idea that maybe if we understand each other’s experience we might understand each other a little better. I think that would probably be a good thing. Further more, I’ve been trying to hold in all my grump & I am very tired.

** Apologies. I know this is not my best writing. I’m really sore & really tired.

You make me sick..

Chronic illness is a shit show. Sometimes literally. Which is thing a that often goes unmentioned. Beyond the pain, being incapacitated & generally hindered in life there is the embarrassment factor. Believe me, that’s no small thing.

Disability brings many embarrassments. Perhaps most notably, for me, is the discarding of a layer of delicacy that I cherished. I am not by nature a person who cares to discuss certain bodily functions. I don’t find toilet humour funny. I don’t need the details of your bathroom trip. I have weird anxieties about toilets/bathrooms that are not my own. I’ll hold a pee for ten hours because the toilets in the bar aren’t spotless or because I saw a hair in your bathroom. A pee used to be the absolute limit of what I would even consider doing in toilet outside my own house. Now, I long for the time when I could reject toilets willy nilly & only go in the privacy of my home. Those were the days.

These days I always need to know where the nearest ladies is. Often I can’t leave the house because I cannot be more than a few feet from my bathroom. If I go out the choice of where & when I deign to use the facilities is no longer mine. My stomach now reigns supreme. It’s not a benevolent ruler. IBD has put paid to any friendly relations between myself & my digestive system. Throw in a hiatal hernia, GERD, anxiety & fibromyalgia and you have the making of all out war. In short, my digestive tract rarely behaves. Whether it’s vomiting, diarrhoea or constipation it’s always up to no good.

Sick emoji

Now, along with cramps & heartburn & nausea & wind & reflux & horrible, horrible pain I get to deal with the crippling embarrassment. I have to worry that the public toilet will be packed when my stomach is in distress. I panic that I won’t get off the bus in time to not ruin everyone’s day with the smell of my vomit. I have to use friend’s bathrooms & worry if I’m taking too long. My boyfriend gets to listen to me throwing my guts up whilst he lies in bed; trust me, it’s not sexy.

I am constantly trying to manage these symptoms in ways that allow me to avoid talking about them. I time eating around when I will be in locations that I can easily to escape to the facilities without drawing too much attention. I’ll avoid eating before car or public transport journeys. Often, I’ll just stay home. At heart I’m still a person who doesn’t want to even allude to any of this stuff. I’ll say I don’t feel great when what I mean is one way or another the contents of my stomach are going explode. I’m embarrassed to talk about it. I’m embarrassed for other people to know much about it. I’m mortified at the thought of it getting worse.

Embarrassed chimpanzee

As hard as I find it I’m now a person who has to do these cringe inducing things ALL THE TIME. I find myself having a near panic attack in a cubicle because maybe people can hear my insides trying to get out. I’m quietly dying whilst Drs question me about my bowels. I am rushing into pubs you usually couldn’t pay me to step into to use toilets worse than the one in trainspotting. It’s awful. I hate every twinge & cramp & wave of nausea; partly because they feel rotten, but mostly because I’m embarrassed.

So, here I am talking about it. I’m hoping if I just put it out there for all to see I can stop freaking out. I know other people experience this stuff & I’d hate to be part of the silence that makes anyone else feel this rubbish. If nothing else perhaps being a bit more open will alleviate some stress, which can only be good for my tum.

Most of the time…

I haven’t cut myself for a long time. Realistically speaking, I cannot ever cut myself again. They call this recovery. Apparently, I’m recovered. I just don’t always feel it.

Tonight I looked through my old self harm pictures. Yes, I have pictures. When I was in the thick of it I always took photographs. Firstly because I felt compelled to, it was part of my ritual. Also, because I couldn’t trust myself to judge the severity of my wounds. Those pictures gave me the tiny bit of distance required to see what level of medical intervention I could get away with. Now, they’re a stop gap.

They’re the thing I do when I want to cut so badly it hurts not to. I look at those images of gore & miss it.

I miss the blood. The hot, flowing, staining everything I own blood.

I miss the smell & that crackling sound my skin makes when I slice into scar tissue.

I want the pain. I want the deep, sharp trauma my blade inflicts & the hot throb of infected tissue. I long for the ache of putting a butchered arm into a sleeve.

I know that doesn’t make any sense. I know it’s sick & crazy. It is still true. There’s a reason I yearn for the carnage; it works. Only briefly and, sure, it also fucks up your life, but those moments of respite are everything. Physical pain is nothing compared to the relentless agony that can exist in my head. Most of the time it’s manageable. Most of the time I can make it sleep. Most of the time I’m in control. Control isn’t easy. It is work. Exhausting, consuming labour.

The blade is easier. In the short term it’s beautiful relief. All those horrific feelings pour out with the blood. I can slash through my anguish just as easy I hack through my flesh. That’s why we do it. In case you were wondering. The reason some us do insane things to ourselves is because it’s effective. We hurt ourselves to heal ourselves.

The calm just doesn’t last very long. The sickness comes back. It returns stronger every time. The crazy grows. You need bigger, deeper, scarier cuts to keep it quiet. Then the self harm becomes a crazy of its own. You need it. You find yourself listening to drs who say you’re going to die. And even though you really don’t want to die. It’s hard to care. Now the crazy is trying to destroy you & the cutting is competing to do you in first.

So, I don’t cut anymore. I can’t cut anymore because I cannot control it.

If I want to be in charge,

If I want a chance at living a life I love,

If I want to not hurt everyone who cares about me,

I can’t cut.

Sometimes, though, I desperately want to. The easy way out looks good. The horror movie in my head wants to come to life, but I can’t let it. I don’t cut.

I just look at old pictures

And

Write all the things I can’t bring myself to say out loud.

I don’t cut anymore & most of the time I’m glad.

Trigger bang bang…

Anyone who spends any time on social media will have become familiar with the term triggered. Over the last few years it has entered the public lexicon. Unfortunately, it’s meaning has been incorrectly implanted in the public consciousness.

Triggered is actually a psychological term usually related to PTSD. A trigger is an external stimuli that produces a very uncomfortable emotional response; most often panic attacks or flashbacks. However, varied symptoms can result from the triggering of a traumatic memory. It absolutely does not mean offended or hurt. I’m sure most people will have come across the correct explanation of the term. I have certainly witnessed many try to explain why using the term as an insult or a vehicle for mockery is not ok. Yet, the misuse continues. It occurred to me that perhaps what is needed is an accurate representation of what happens when a person with PTSD is triggered. Maybe if people understood the reality they wouldn’t throw the word around so carelessly. So, I thought I would share what triggered means to me.

Whenever I have been pregnant I have been unable to wear my regular perfume. I wear the same scent everyday in life, but some weird olfactory sensitivity means during pregnancy it makes me nauseous. Thus, I change it & the scent I wore I during my first pregnancy is a major trigger for me. Triggers can be anything & no one has any control over what might become one. I experienced a million sights, sounds & sensations during that time, most of them hold little power over me. That scent, though, is potent.

Snow patrol, blue sky

Formidable enough to render me a sobbing wreck. Being taken off guard by that scent whilst shopping forced me to run shaking from a book shop to vomit in the street. All the while struggling to breath & bring myself to the present. A nurse who had too liberally applied the fragrance sent me shuddering back 15 years. Leaving me so panicked I crawled behind a chair & hid. I stayed crouched on the floor desperately trying to claw my way out of the worst day of my life. Completely trapped in my own personal horror film until some kind soul got me some diazepam & did me the kindness of handing it over without questions. That heady aroma has caused nightmares so vivid that I’ve woken myself with my own screams. Dreams so painfully real that I’ve had to keep myself awake for days. Sitting in the company of someone wearing that perfume once contaminated me. On returning home I could not rid myself of the smell. Real or imaginary it lingered until I smashed my hand with a marble pestle. So tortured was I by the memories the scent brought to life that I ploughed that pestle into my hand until I broke two fingers. The cracking of bones a welcome jolt back to the here now.

Diazepam 10mg

Triggers are uncontrollable. It is not within the power of a traumatised person to select what reactivates their trauma. Nor can they choose not respond. Our minds shelter dark territories & they’re all one way roads. Once you’ve slipped in, you have to press on through. Being triggered isn’t a foolish over reaction. Nor is it the hurt feelings of the overly sensitive. It is the raw & brutal reality of those who have dealt with the unimaginable. It’s a battle scar on the brain.

I can’t stop anyone from misappropriating a word. Ignorance abounds. The only tool I have to fight with is honesty. The truth is that trivialising a serious symptom of illness hurts. It stifles the conversation & prevents people seeking help. It makes vulnerable people feel weak & ashamed & stupid.

So, no, I’m not triggered by your cheap dig. I’m just tired of the stigma. Very, very tired.